…a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

While I don’t have a problem with this definition, I do have a less ambiguous description of what fibromyalgia means to me. To me, fibromyaglia is a combination of sensitivities and stressors that lead to diminished well-being and health. I have found that an imbalance in my life, coupled with maladaptive coping strategies, exacerbates my health problems. Fibromyalgia is very complex. There are many causes and contributing factors, which lead to a spectrum of symptoms, which ultimately develop into the self-perpetuating syndrome known as fibromyalgia.

At this point in time, the best that conventional medicine can do is diagnose the syndrome and treat the symptoms. As important as those aspects of managing fibromyalgia are, they are only the first steps. Fibromyalgia is too complex, too new, and too mild of a health problem for the medical community to press beyond symptom management and into the confusing and complex maze of causative and contributing factors, the available interventions, and the process of moving from treating symptoms to addressing the root of the problem. The medical community is further bogged down by the need to get interventions/treatments approved by the federal government before being able to legally and ethically recommend them to their patients. Federal approval requires research, which requires a lot of time, money, manpower, and effort.

Part of the challenge of moving forward in treatment of fibromyalgia, as well as many other syndromes and spectrum disorders, is that no two patients are the same. In fibromyalgia, symptoms may present in many different areas. While pain, fatigue, and sleep problems are the hallmarks of fibromyalgia, other symptoms may include irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud’s Syndrome, neurological symptoms, and impaired coordination. Beyond the complex mix of symptoms, fibromyalgia patients frequently respond differently to treatments and drugs, so doctors and patients spend a lot of time trying to find the treatment or combination of treatments that bring the most possible relief from symptoms.

The key for sorting out symptom management and treatment for any complex condition is to identify which symptoms are impacting function the most, and focus on addressing those issues first. Over time, other symptoms may take precedent, and you should monitor progress so you can shift your focus to “new” or, more likely, newly identified symptoms. You will likely revisit treatment options for pervasive symptoms multiple times throughout treatment, but the goal should always be to maximize function while minimizing symptoms.

Another important aspect of managing complex conditions is identifying any areas of maladaption that may have developed. Just as with any chronic condition, individuals with fibromyalgia are at risk for developing mental illnesses, especially depression and anxiety. Whenever a patient experiences a sense of hopelessness or sheer exhaustion, it becomes difficult for them to cope with their illness and with life in general. In an effort to cope with their symptoms, patients may develop “quick fix” or addictive behaviors in an attempt to get by or self-medicate. They may turn to drugs or substance use to escape, counteract, or mask their symptoms. Even legal substances, such as caffeine, alcohol and nicotine, can be habit forming and can cause other health problems if used excessively or for extended periods of time. Patients may also turn to non-productive, time wasting leisure pursuits that provide them with a means of escape from reality or their present stressors, but do nothing to make them feel better in the long run (for example: TV, video games, etc.). They may fall into poor nutritional habits, such as subsisting on carbohydrates and sugars, which offer quick energy boosts, but offer no significant nutritional value and lead to energy crashes and large fluctuations in energy levels. Patients may also “adapt” in ways that create significant imbalance in their lives. They may use all their energy at work or early in the day and then struggle to make it through the rest of their days or rely on mid-day naps to accomplish their afternoon and evening duties. Any maladaptive strategy a patient has developed will only serve to exacerbate their symptoms and hamper their healing and recovery, which is why it is an important area of intervention when treating fibromyalgia and other chronic conditions.

Some patients benefit from identifying sources of stress or imbalance in their lives. They could have overwhelming emotional difficulties that must be resolved in order for them to experience mental well-being. They may have too many responsibilities they try to juggle, and they may need to learn to simplify their lives by delegating responsibilities, saying “no” to some people or some opportunities, and prioritizing their use of time and energy. There may be aspects of their environment that cause them stress, especially if they have sensitivities to noise, clutter, smells, light, etc.

Finally, it is important for patients to feel empowered to face fibromyalgia. When first diagnosed with a chronic condition and the possibility of experiencing limitations and symptoms for the remainder of their lives, patients need to be given hope, education, and support in order to move through the initial shock, denial and anger and to find ways to accept and adapt to optimize functioning within their limitations.

Comments

Thanks for taking the time to discuss this, I feel strongly about it and enjoy learning more on this topic. If possible, as you acquire expertise, would you consider updating your site with more information? This will be very helpful.

when defining yourself as your disease or your syndrome there is the risk you become the disease and loose yourself. i was told i shouldn’t become a chiropractor from my lecturer because he diagnosed me with fibromyalgia. i dont believe in syndromes, i ignored his diagnosis i become i chiropractor and have improved my level of health drastically and from my experience l’ve been able to help many others. there are answers out there, find them you have the ability to gain better health!

Lupus Adventurer

I was glad to find your blog, and I too, refuse to be defined by my illness. I am a lupus patient of 25+ years, and lupus is only one of the many things in my life. You have found the secret of not being a victim, and I enjoyed reading your blog today. Your perspectives are excellent, and you are providing some great information here. It was a pleasure to find such a well-done health blog. Thanks.